1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Never Ask Us if We're Hungry -- The Answer's Always No
There are three of us here and for many years, none of us ever got hungry. When our brains would turn to mush, when our faces would go numb, and we would start the invisible vibration which is the signature dance of ME/CFS, we knew we needed to eat.
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Live webcast IoM meeting Jan. 27th 1:pm starting

Discussion in 'Institute of Medicine (IOM) Government Contract' started by Nielk, Jan 27, 2014.

  1. Bob

    Bob

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    I'm not sure about 'NID'... It reminds me a bit of The Knights Who Say 'Ni!'
    It could get a bit farcical when trying to explain exactly what illness we've got!
    "Sorry, what illness did you say you have?"; "I said I've got... ... 'Ni!'"
    Last edited: Jan 30, 2014
  2. Bob

    Bob

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    Yes, N.I.D. sound OK.

    I used to think that endocrine dysfunction didn't play a big role in ME because, during my first few years of illness, I didn't have many of the annoying hard-to-pin-down weird symptoms.

    I purely suffered from PEM, exhaustion, memory loss and cognitive dysfunction.

    But when I experienced a major relapse, 10 years into my illness, I suddenly experienced what seemed to be a fluctuating endocrine system. (I felt over-stimulated, while also being exhausted.) (I'm just guessing but it seemed like an auto-immune flare up to me, involving my endocrine system.)

    The NHS doesn't usually offer extensive blood tests, but my thyroid stimulating hormone was found to be abnormally high (while my thyroid levels were supposedly normal.)

    The over-stimulation settled down some months later, as I improved after my relapse. I'd never experienced it before, and it's not flared up again since.

    I get the feeling that many ME patients suffer from weird stuff like this going on. (i.e. subtle endocrine dysfunction, and dysautonomia etc.)

    (My doctor dismissed my clinically abnormal TSH levels, saying that they were irrelevant, but that's a long story for another time!)
    Last edited: Jan 30, 2014
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  3. Ember

    Ember Senior Member

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    Posted by Wildaisy: "Transcript by Patricia Carter You are welcome to post this transcript elsewhere on the internet if you say the transcript is from MECFSForums and give a link to this page."
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  4. Bob

    Bob

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    In one of the IOM committee videos, there is a short discussion whereby members of the committee say that they are looking towards the patient community for thoughts and proposals about the name. Perhaps we could start a new thread to discuss ideas for names, and then run a forum poll on a shortlist of names, and then officially submit the results to the committee from Phoenix Rising. Anyone think that's a good idea?
    Last edited: Feb 1, 2014
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  5. Sing

    Sing Senior Member

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    Yes. It could be a serious thread, minus our joking here (which I enjoyed). And if naming a disease after the name of a person is no longer done, we could skip "Ramsay's Disease", though I like it. Instead we could just try to come up with names and their acronyms which express something pertinent about our illness, that don't, in acronymic form, express something negative.
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  6. Denise

    Denise Senior Member

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    While I totally understand (and share) the very serious concerns about, and objections to the P2P, I think it might be helpful to note the wording on the P2P site --- (bolding added by me)
    "P2P workshops are designed for topics that have incomplete or underdeveloped research, difficulty producing a report synthesizing published literature, and are generally not controversial." http://prevention.nih.gov/p2p/default.aspx
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Hm, good point.

    I think this can be read two ways, one is that the process is not designed to handle most controversial topics, but it could handle some. The question here is how is it not going to work for most but will for others, and what's the characteristic(s) of the ones it would work with?

    The other meaning would be that the process will not work with any diseases which are generally controversial, i.e. are substantially controversial, or if there is some amount of controversy among most members of the profession about it. If there were only a minor amount of controversy over the topic, the process would be suitable. ME would fall into the excluded topics by this meaning, I am pretty sure.

    I think the latter is probably the meaning they, uh, meant.
  8. CBS

    CBS Senior Member

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    P2P = "Pathway to Prevention." "The P2P program is strategically located in the NIH Office of Disease Prevention (ODP).

    Office of Disease Prevention? Are they serious?

    The reason the P2P process is best suited for non-controversial subjects is likely because you have to have some degree of consensus regarding the nature (or even the existance) of something if you are trying to prevent it as opposed to simply trying to agree on a set of diagnostic criteria.
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  9. Sing

    Sing Senior Member

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    Hooray, you are here again, CBS!
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